Many different people make up the home health care workforce, including professionals (e.g., nurses, physical therapists, physicians) and direct care workers (e.g., home health aides, personal care aides), along with individuals and their families. As in health care in general, home health care depends on a team of individuals working together. In one panel of the workshop, four speakers addressed the role of each person on the home health care team (as well as the team itself) and how to facilitate their roles in ways in which they will be needed for the future ideal state of home health care.
Thomas E. Edes
U.S. Department of Veterans Affairs
In the U.S. Department of Veterans Affairs (VA), the home-based primary care program uses a team approach in its pursuit of the triple aim: improving the patient experience of care (quality and satisfaction), improving population health, and reducing per capita care costs. Edes began with the story of one particular veteran, which is presented in Box 5-1.
Home-Based Primary Care in the vA
In the VA, Edes said, home-based primary care is comprehensive, longitudinal primary care delivered in the homes of veterans with serious
A Veteran’s Story
Edes related the story of a 74-year-old veteran with advanced Parkinson’s disease who was struggling to manage at home. Not surprisingly, Edes said, he was developing significant depression. He had been falling a lot. He had lost 40 pounds and had aspiration problems, dementia, and hallucinations. He was treated with deep brain stimulation, but that had not helped him much. He still had serious problems with his gait, muscle spasms, and tremors; and he had difficulty swallowing.
After several hospitalizations, the medical team recommended transition to a nursing home, but the veteran refused, saying, “I’m going to die if I’m admitted to a nursing home.” The health care team took his preferences to heart and rewrote the care plan. Instead of the nursing home, he was discharged to home with home-based primary care and home health aide services. Even if it did not change his prognosis, home was where he wanted to be.
The U.S. Department of Veterans Affairs (VA) home-based primary care team worked with his caregivers so that they understood his daily care and support needs. The social worker helped him identify a caregiver for support and socialization through the Veteran Directed Care program (which the VA has in more than half of the states) and connections with the community and identified sources of support for his daily care needs. The rehabilitation therapist provided the help necessary for the veteran to increase the amount of exercise that he received and prevent falls.
In addition, the nurse helped explain a complicated medication management regimen and trained caregivers in the Heimlich maneuver if aspirations occurred. The dietitian worked on improving the patient’s nutrition to help him gain weight and taught techniques in preparing foods to avoid triggering esophageal spasms. Meanwhile, the psychologist tackled the problems of isolation and depression. In short, the full team continuously worked to find solutions, including ways to address new problems that arose.
As a result of these comprehensive, integrated efforts, after a year in the program, the veteran displayed a remarkable improvement in health status: he had about half the rate of falls as in the year before enrollment (9 versus 16) and only one hospitalization (versus 5 the previous year), and his weight stabilized. On the psychosocial side, he was less isolated and more involved with his community, which he said improved his quality of life.
Equally important, he felt that he had recovered some of the control over his life that his disease had eroded, and his goals were met: no nursing home, no feeding tube, fewer hospitalizations, and greater activity and community engagement.
SOURCE: As presented by Thomas E. Edes on September 30, 2014.
multiple chronic diseases and disabling conditions who are too sick to go to the clinic. Care is provided by an interdisciplinary team that comprises a nurse, a physician, a social worker, a rehabilitation therapist, a dietitian, a pharmacist, and a psychologist. Since 2006, those teams have included a mental health professional, because “if we do not effectively manage our patients’ mental health conditions, we will not effectively manage their medical conditions,” Edes said.
This is, admittedly, an expensive team, but, Edes said, “We cannot afford not to have that expensive team.” He then described the population that these teams care for: men in advanced stages of disease (a 24 percent annual mortality) with, on average, more than eight chronic medical conditions. About half are dependent in two or more activities of daily living (ADLs), just under half are married, and 30 percent live alone. For those with a caregiver, 30 percent of the caregivers have activity limitations as well, he said. With respect to diagnosis, half of the patients have diabetes, one-third have cancer, 40 percent have depression, about one-third have dementia, 20 percent have schizophrenia, and 20 percent have posttraumatic stress disorder. Although home-based care from the interdisciplinary team is available to veterans regardless of age, most in the program are older, and the proportion of the veteran population age 85 years and older is growing, as it is for all Americans, but it is growing at a much faster rate for the veteran population.
Even though the veterans in this population have high mortality rates, on average, they receive home-based primary care for more than 300 days. To make this program affordable, Edes said, it must focus tightly on the veterans who are in the 5 percent who account for half of the VA’s health care costs and not on the 50 percent who account for only 4 percent of costs. “Almost anything you do in that latter population will raise costs,” he said.
The goal of the program is to support veterans so that they may remain at home for as long as is feasible with optimal health, safety, independence, and purpose—and at lower cost. Achievement of that goal, Edes said, depends on
- Increases in veterans’ access to home-based services,
- Minimization of avoidable hospital days, and
- Prevention or optimization of nursing home care.
Differences from Medicare
Edes drew a distinction between the VA home-based primary care and traditional Medicare home care. The two organizations have different target populations, different processes, and different outcomes. The VA’s program provides longitudinal, comprehensive, interdisciplinary care to
TABLE 5-1 Comparison of the VA Home-Based Primary Care and Medicare Home Health Care
|VA Home-Based Primary Care||Medicare Home Health Care|
|Targets complex chronic disease||Targets remediable conditions|
|Provides comprehensive primary care||Provides specific problem-focused care|
|Does not require skilled care||Requires skilled care|
|Does not require the patient to be||Requires the patient to be homebound|
|Accepts declining status||Requires improvement|
|Uses an interdisciplinary team||Uses professionals from one discipline or a|
|Provides longitudinal care||Provides episodic, post-acute care|
|Reduces hospital days||Has no definitive impact|
|Has a limited geography and intensity||Is performed anywhere, anytime|
SOURCE: Adapted from Beales and Eades, 2009, with permission from Elsevier and Thomas Edes.
veterans with complex chronic diseases and complements Medicare home care, which has more limited purposes, as shown in Table 5-1.
Edes noted that the VA program covers key gaps in Medicare home care that had been emphasized by previous speakers, including the inclusion of people with complex, multiple chronic conditions and not merely those with post-acute care needs or remediable conditions; it takes a more comprehensive approach to the provision of care; and it has a focus on patient needs and not homebound status. Edes said that the care team members are truly interdisciplinary and work together to create a unified plan of care for each patient. Moreover, they recognize that they are likely to be the patient’s care provider for the remainder of his life. These advantages have helped the VA program reduce the numbers of hospital days and total costs for this high-acuity population.
Where the Medicare home care program is especially helpful to veterans, he said, is in providing post-acute care, providing care on a high-frequency basis (albeit for a short time), and providing care outside the geographic reach of the VA home care programs.
In 2002, Edes said, the VA analyzed the impact of home-based primary care involving more than 11,000 veterans before and after implementation
of the primary care program (Beales and Edes, 2009). The researchers found that program participants had 62 percent fewer hospital days and 29 percent fewer admissions, 88 percent fewer nursing home days, and a 21 percent reduction in the 30-day hospital readmission rate. Furthermore, the net cost to the VA was 24 percent lower when the home-based primary care program was implemented, after the cost of the program was accounted for. Currently, some 34,000 veterans receive these services, and enrollment continues to grow. Furthermore, 38 percent of these veterans live in rural areas. Pilot tests are being conducted with the Indian Health Service to expand the program’s reach into American Indian populations. Additional analysis has shown that the VA’s cost reductions have not been achieved by shifting costs to Medicare. In fact, Edes said, veterans’ enrollment in home-based primary care achieved a 25 percent reduction in combined VA and Medicare hospital admissions and a greater reduction—36 percent—in combined hospital days. The result was a 13 percent reduction in combined Medicare and VA (net) costs.
Edes said that results like these meant that the model was included as part of the Patient Protection and Affordable Care Act of 2010 (ACA)1 as the Independence at Home demonstration program, along with a financing structure to support it. Like the VA home-based primary care program, the Independence at Home model targets complex, chronic, and disabling conditions; provides interdisciplinary, longitudinal care in the home; emphasizes skills in geriatrics care; uses electronic health records; and uses evaluation metrics that include quality and satisfaction, as well as reductions in the number of inpatient days. At a minimum, Independence at Home demonstration sites are projected to produce a 5 percent cost savings, and if they achieve more, the additional savings will be shared with the site. The demonstration is in its third and final year and is operating in 14 single-practice sites and in three consortium projects.
Recently, Edes noted, results from a large 5-year, propensity-matched, case-control study of a similar model involving about 700 intervention patients and three times as many controls were reported (De Jonge et al., 2014). This program provides services to mostly frail elders in the Washington, DC, area using an interdisciplinary team. Edes said that it produced a 17 percent reduction in the total cost of care for the patients receiving the intervention. Some components of care—home health and hospice—were more costly for the intervention group, but these costs were more than offset by the lower costs associated with the reduction in receipt of care in hospitals and skilled nursing facilities and fewer subspecialist visits. Again, he said, the conclusion is that home-based primary care does
1 Patient Protection and Affordable Care Act of 2010, Public Law 111-148, 111th Cong., 2nd sess. (March 23, 2010).
reduce the cost of care for carefully selected individuals but does so only for those who are the most frail. Edes estimates that the Independence at Home model, if it were expanded nationwide, could save the Centers for Medicare & Medicaid Services more than $6 billion per year.
Researchers face methodological challenges in studying these new models. Edes said, “Robust methods of analysis are needed in addition to randomized controlled trials to meet the challenges of evaluating complex interventions involving diverse populations with variable comorbidities receiving individualized care in a rapidly evolving healthcare system” (Edes et al., 2014, p. 1955). The complexity of the patients, the services, and the new organizational structures exceed the ability of randomized controlled trials to trace the effects of these programs.
In an analysis of costs, the Congressional Budget Office found that Medicare costs per beneficiary rose 29 percent between 2000 and 2005, but in the VA, per patient costs rose only 2 percent. This difference, Edes said, is largely attributable to the VA’s development of programs specifically for people with serious, complex comorbidities. During those same years, the cost of home hospice services paid for by the VA increased more than 400 percent, the number of inpatient palliative care consults grew 25-fold, the amount of home-based primary care that it provided increased 55 percent, its medical foster home placements nearly tripled, and its home- and community-based services increased 87 percent. Still, overall costs rose only 2 percent.
In 2013, more veterans died in VA hospice inpatient units than in intensive care or other hospital units combined, Edes said. Among those enrolled in home-based primary care and in medical foster homes, about two-thirds die at home. Finally, the overall number of veterans in long-term care increased about 30 percent between 2000 and 2010 because of the sharp rise in the number of veterans aged 85 years and older.
Medical Foster Homes
Edes spoke briefly about the Medical Foster Home program, another long-term care alternative of the VA with costs about half those of nursing home care. This program merges the adult foster home concept with an interdisciplinary team providing home-based primary care. In this case, the foster care provider is taught how to care for the specific patient, and the VA makes any necessary modifications to the home. These foster care providers commit to providing care for the remainder of an older veteran’s life and for 3 years for younger veterans, after which the commitment is renewable.
Centrality of Teams
For the 5 percent of the VA patients who account for half of the system’s health care costs, teams are essential, Edes said, and perform the following roles:
- Provide personal and caregiver support services;
- Provide comprehensive, interdisciplinary, and longitudinal clinical and home care;
- Provide palliative care in all settings;
- Ensure the optimal use of and alternatives to hospital and nursing home care;
- Introduce appropriate assistive technology in all settings; and
- Ensure that transitional care is integrated into all settings; this integration moves beyond care coordination to the actual presence of members of the team in the home and community, and the establishment of relationships with staff, patients, family caregivers, and other community partners.
When teams have such a central role, they can increase access to care, improve its quality, and reduce its costs, Edes believes, because so much waste is inherent in mismanaged transitions.
In addition to the use of teams, the management of transitions, and integration, technology is another key to improving home care, he said. The VA already has a robust electronic medical records system (the VISTA system), but it may not be accessible in the home or in geographic areas where Internet service is unreliable. For the present, the VA has developed a software package that includes 1 year’s worth of a patient’s medical records on a laptop. The importance of mobile electronic documentation will increase as point-of-care diagnostics and hospital-at-home programs become more prevalent, he said.
Edes concluded that too many people see the growing population of people with multiple chronic disabling diseases and their concomitant need for long-term services and supports (LTSS) as the problem and the source of the unsustainable rise in health care costs in the United States. However, he said, a refocus on the kinds of services that best serve the small number of people who incur most of the health care costs can both reduce costs and greatly improve the quality of care.
National Alliance for Caregiving
Hunt began her remarks by emphasizing one of the themes of earlier presentations, which is the importance of the patient–caregiver dyad and how it is at the center of a set of relationships that includes home health care providers, physicians, nurses, therapists, and all the other health care providers. Families and other caregivers play a major role in implementing a patient’s care plan—diet, exercise, medication, and so on. For that reason, she said, “we need to think of the family caregiver as a member of the care team” and to build scalable models of care that are truly patient and family centered and that can accommodate people with multiple chronic conditions. Lessons on ways in which to do that may come from states that have created strong home- and community-based care programs that involve not just medical and health care professionals but also individuals who provide supporting services, such as personal care, companionship for people with Alzheimer’s disease, and transportation. “If they can’t get to the doctor’s appointment, the whole system kind of falls apart,” she said.
Skilled providers of home care play an important role in training family caregivers, Hunt said. They can also assess both the ability and the willingness of caregivers to meet the demands being placed on them. Some needed services may be too physically or emotionally difficult for a family caregiver to perform (e.g., ostomy care), and the caregiver may require aid from an external source.
Technology—for example, medication reminders, pill dispensers, and passive monitoring systems—can help not only the patient but also the family caregivers, Hunt said, by helping the caregivers manage their time or providing them with efficient ways to connect to the care system. Such aids must be affordable, as they are likely to be paid for out-of-pocket. The developers of technologies need to work with caregivers to design useful, affordable new tools, Hunt suggested.
Hunt identified barriers to the vision of improving caregiver support. These included a lack of data on the return on caregiver investment; the generalizability of existing models; and current Medicare restrictions, such as the requirement that a patient be homebound or a lack of reimbursement for telemedicine in urban areas. Other countries (e.g., Australia) have in place systems for providing long-term assistance to family caregivers, she said. She added that the United Kingdom has also overcome some of the barriers, even for parents of children with disabilities who face a lifelong caregiving responsibility.
Finally, she said, patient goals and patient-reported outcomes are es-
sential in assessing the quality of care. “It is not so much what we did for the patient as what did the patient want and what did the family want?”
Robyn I. Stone
Next to the family, people in the direct care workforce are probably the most important component of the home care system, Stone said. In thinking about whether the problems being discussed at the workshop should be defined as home health care, home care, home- and community-based services, or personal care, she decided to talk about all of these, because direct care workers are present in all of these permutations of the care-at-home sector.
Even though many programs may fit under the broadest rubric of home care, Stone believes that it is important not to use these terms synonymously. It is not just a matter of semantics, she said, but confusion shows up in the data about home care and becomes ever greater in discussions of new service delivery models. Data are collected for at least three categories of direct care providers: home health aides, home care aides or personal care attendants, and hospice aides. Within those are further subcategories. Housekeeping and companion services may or may not be considered in-home care.
Types of Direct Service Workers
The two categories of workers who provide most of the hands-on functional assistance for patients are home care aides and personal care attendants, Stone said. They assist with basic ADLs and personal care (see Chapter 2 for a description of ADLs); they may also assist with instrumental activities of daily living (IADLs).2 In some situations, they may also be trained to manage medications. They are the workers who have one-on-one relationships with patients, they serve as liaisons with family caregivers, and they provide emotional support. More importantly, “direct service workers are really the eyes and ears of the care system,” Stone said. They perform this key observation role in conjunction with family members and when no family member is present. In the next 25 years, because of increased childlessness and the divorce rate in the United States, the number of family caregivers will decrease, Stone indicated. Although relationships between
2 IADLs are complex skills that a person needs to live independently, such as shopping, preparing meals, using the telephone, taking medications, and managing money.
family caregivers and direct care workers are often good, they also can be “really terrible,” she said, “with a lot of tension between the two.”
Although the number of direct care workers is expected to grow 48 percent between 2010 and 2020, Stone said, these two key occupational categories (home care aides and personal care attendants) are expected to grow 70 percent, and after that, as more Americans reach age 85 years, the demand will likely grow even faster. Wages in this sector are low and have been stagnant for the past decade, she said. Benefits vary widely, and a high proportion of direct care workers are employed only part-time, which further impedes access to benefits. Enforcement of a U.S. Department of Labor plan to extend minimum-wage and overtime protection to home care workers has been delayed as a result of states’ concerns about the potential impact on Medicaid programs and industry concerns that families could not afford the increased cost.
“When we think about what we pay them, we wonder how we can get anybody to do this work,” she said. Nationally, the people who do take it up are mostly non-Hispanic, middle-aged women. About half are white, and about 35 percent are black, although Stone predicts more diversity in this workforce in coming years, along with the greater diversity in the population of elderly individuals.
The work situation of hospice aides is somewhat better than that of home care or home health care aides, Stone said, as they receive higher wages and have greater access to employer-sponsored health insurance and other employee benefits. Hospice aides are also more likely to be employed full-time and to stay in their jobs. Hospices’ more generous wages and employment benefits—as well as the somewhat better training—may result from the higher reimbursement rate for hospice services. “We need to be thinking about bringing the rest of the direct care workforce up at least to where the hospice workers are now,” Stone said.
For Medicare- and Medicaid-certified providers, home aides and hospice aides must have 75 hours of training and pass a competency exam. No federal training requirements exist for home care and personal care aides, and the amount of training varies by state, with many states having no requirements whatsoever. Stone said that a lack of training also may hamper consumer-directed services, such as cash and counseling.3 Training for the
3 Cash and counseling is “an approach to long-term personal assistance services in which the government gives people cash allowances to pay for the services and goods they feel would best meet their personal care needs and counseling about managing their services” (RWJF, 2013). Under cash and counseling programs, individuals determine who will be paid for provision of personal care services (including family members) and how those services will be provided.
eyes and ears function is especially important, Stone stated, since research has shown that home health aides observe a change in a patient’s condition 5 days before a nurse does.
Recruitment and Retention
Problems of low pay and a lack of training suggest to employers and families a lack of competence among direct care personnel, Stone said, rather than a shortage of workers, per se. When the local economy is poor, recruitment is not a problem. Stone’s organization, LeadingAge, includes in its membership about 6,000 nonprofit agencies that provide services to the aging population, from nursing homes to assisted living facilities, home health agencies, continuing care retirement communities, low-income housing developments, and many others. When the economy begins to improve, employee turnover among the members begins to rise, she said.
High turnover rates lead to a lack of consistency in care and a succession of individuals providing care in the home, which can negatively affect both the physical and mental well-being of the recipients of care, Stone said. High turnover rates are also hard on an agency’s remaining employees, because when the agency is shorthanded, workloads increase. They can potentially affect both the quality of care and the quality of life, she said. Turnover also increases costs for employers and the health care system as a whole. With the cost of replacing a home care worker averaging $4,500 and turnover rates of between 60 and 75 percent, the total costs are enormous.
Stone said that other factors affecting workforce recruitment and retention are the stereotyping of the industry (which is especially true for nursing homes) and working conditions. Home care work can be isolating, with workers having no real sense of community with the other members of an agency’s workforce. This area has not been well researched, Stone said.
Improving the Direct Care Workforce
According to Stone, principal strategies to resolve problems with the direct care workforce for home-based care include the following:
- Competency-based training that includes good clinical placements;
- Improved supervision focused on coaching and mentoring;
- Protocols for resolution of problems;
- Continued staff development and career advancement potential, but not necessarily career ladders (“Not every home care aide or personal care attendant wants to be a nurse,” Stone said.);
- Policies that permit direct care workers to specialize in, for example, dementia care or medication management;
- Procedures that allow frontline workers to be engaged as part of the care team;
- Improved wages and benefits;
- Training around the challenges of caring for people who have multiple comorbidities and who take multiple medications;
- Training in signals and symptoms of functional decline, depression, social isolation, and the impact of dementia; and
- Training in managing family dynamics and cultural competence.
As an exemplary program, Stone cited the Personal and Home Care Aide State Training (PHCAST) Program, a six-state demonstration program funded through the ACA.4 North Carolina’s PHCAST project, for example, is a four-phase program that develops career lattices and career ladders, is involved with the state’s high schools and community colleges, and has established certifications for different levels of training. She also cited the Eldercare Workforce Alliance’s advanced direct care worker concept, which, again, proposes career lattices so that workers can become home care and personal care aides with more advanced capabilities. Finally, she noted the Service Employees International Union Healthcare NW Training Partnership, a competency-based apprenticeship program in Washington State involving a school and labor management partnership intended to deliver training to the state’s 43,000 home care aides.5
Meeting Future Needs
In the long term, Stone predicted, the emerging gap between the need for home care and the available workforce will grow because of a declining availability of individuals able to provide informal care, a decline in the availability of people in the age groups who want to hold these types of jobs, and an increase in demand for home care services brought on by an aging population and shifts of care from institutional settings to the home and community. Although technology—robots, for example—may fill part of the need at some point, for the foreseeable future, “a significant human capital need” will remain, Stone said, although technologies may complement that need.
Also important is the development of new worker pipelines, as the North Carolina PHCAST project did with high school students. Older workers, the unemployed, new immigrants, and former family caregivers may provide new worker pools. The new long-term service delivery models
5 See http://www.myseiubenefits.org/training-partnership-recognized-white-house-expansionapprenticeship-program (accessed December 5, 2014).
being developed, primarily under the ACA, will not happen without investment in this key workforce, Stone said.
American Association of People with Disabilities
The agencies that provide personal care services in the Medicaid environment operate on thin margins, and managed care organizations are expanding in this area, increasingly affecting how states deploy their home- and community-based service systems. Claypool sees an opportunity to help these organizations understand the importance of the direct care workforce. It would be a fundamental error for them to adopt a “rigid clinical frame” and deploy resources solely on the basis of a medical model, he said. If they did, the provision of any service outside medical care—that is, all the social services needed by patients with chronic medical conditions and their families—would be deemed a service that increases costs.
Among the many changes in the health care environment in recent years are the consumer-directed workforce and the independent living movement, both of which involve the provision of care in the home. According to Claypool, research shows that a majority of older adults want more control over the workers who come into their home, including when they come and what they do. Programs that offer this greater control are consumer directed. The independent living philosophy can help guide the thinking about how this workforce is deployed and how people with clinical training can guide that process. Independent living services provide services related to ADLs. They are important functional tasks and, in the Medicaid world, are distinct from clinical tasks. “We have to think about this as not skilled versus unskilled, which is a framing that I think is harmful to the workforce,” he said.
The idea of career ladders is grounded in the skilled care frame and considers home care workers to be the bottom rung. However, Claypool said, “we should value that role and invest in it appropriately. We are actually adding value by helping people remain direct care workers.” The promotora6 model, he believes, can be adapted to enable direct care work-
6 A promotora is a community health worker used in Hispanic communities. “As trusted members of their community, promotoras provide culturally appropriate services and serve as a patient advocate, educator, mentor, outreach worker, and translator. They are often the bridge between the diverse populations they serve and the health care system” (Rural Assistance Center, 2015).
ers to take on as much responsibility as they possibly can to assist people with chronic conditions and difficulties with ADLs.
Encouraging direct care workers to expand in these areas can be done in ways that complement nurses’ roles, freeing registered nurses to practice at the top of their training and scope of practice, he said. The promotora model also embodies the idea of health promotion, reinforcing the “independent living philosophy and values that come with it, [which] are essential to allowing the workforce to really understand how they can work with individuals.”
In addition, he suggested that attention be given to health-promoting activities related to diet and exercise. Direct care workers from the same socioeconomic strata as their clients understand the challenges faced by people who live in food deserts, who are unaccustomed to balanced meals, or who have no good options for exercise. Even helping a person develop the strength to walk to the bus stop can be helpful. (Claypool noted that knowledge of how to navigate fixed-route public transportation systems encourages independence, because they are more reliable than paratransit systems.) Direct care workers can potentially serve as “force multipliers,” he said.
An open discussion followed the panelists’ presentations. Workshop participants were able to give comments and ask questions of the panelists. The following sections summarize the discussion session.
Education and Training
Margherita C. Labson, The Joint Commission, asked how prepared the professional staffs of home health agencies are to conduct the types of training suggested for direct care workers. Stone said that she does not believe that they are trained in this at all. Stone cited a 2008 Institute of Medicine (IOM) report that addressed a lack of training in geriatric competencies across the entire workforce (IOM, 2008). She said that a systemic lack of investment has produced a shortage in the number of faculty to be trained, with home care receiving the least investment of all. Claypool said that organized labor has stepped forward in a number of states, like Washington, to develop a training infrastructure.
Michael Johnson, BAYADA Home Health Care, said that a bit of an “educational arms race” is under way. He noted that all physical therapists, occupational therapists, and pharmacists are now (or will be) trained at the doctoral level. He asked if health care professionals are becoming overeducated to do some of the things that they used to do. Is there someone who
can do the work just as well for less? Johnson answered his own question, saying that direct care workers can perform many tasks.
Engaging Individuals and Their Families
Johnson also raised concerns about engaging the family in care. If the family’s perception is that the only person who can do the job is a clinician with a doctoral-level education, he said, problems arise. Family caregivers are disempowered; they do not believe that they can do the tasks required of them. Another consequence of this trend, Claypool said, is that it may be more difficult to integrate teams in which some members have obtained their advanced degrees and others have little formal training. Members of the team with little formal training may have additional and long-standing socioeconomic disadvantages and cultural differences with other team members, as well, yet their perspectives can be of great value because their backgrounds reflect the backgrounds of patients and families. “When we wake up to this one day, I hope we have not disempowered them to such an extent that they no longer share their wisdom,” Claypool said.
George Taler, Washington Hospital Center, asked if, when the VA enrolls someone in the home-based primary care program, a mechanism is in place for assessing the ability and willingness of caregivers in the home to provide care, the caregivers’ integration with the service community, and the household’s financial resources that can be directed to care. According to Edes, the VA’s home-based primary care program does not require that veterans have a caregiver in the home. Any assessment of questions of this type would be made by the social worker or nurse. The VA also has a good track record with finding people in the community who want to be caregivers under the medical foster home model. Gail Hunt said that a number of assessment tools have been developed to determine the ability and willingness of family caregivers to perform needed tasks. The basic criteria have been identified, but no universal tool exists, and it is not clear how widely these basic criteria are used. Part of “ability,” she indicated, depends on what the tasks are and the physical or time limitations of the caregiver. In addition, Claypool said, at some point it may be useful to assess the willingness and ability of patients to adopt the use of technology, as home-based diagnostic and treatment options are rapidly expanding, but many older adults believe that technology is difficult to use, he said.
Teams of Care
Johnson further asked about what has been done to help teams be successful, so that the people who are accustomed to being the leaders and somewhat expected to take that role—primarily physicians—have the com-
petency to know when to lead and when to follow. Do direct care workers, who also should be part of the team, feel competent enough to lead, or do they always follow? Edes said that to address some of the dynamics that arise in interdisciplinary teams, the VA conducts interdisciplinary team training. In addition, every team member takes a leadership role on a rotating basis. The home-based primary care providers are the VA staff, and they rely on community providers for home health aide and hospice services. It can be harder to embrace these non-VA staff as team members. At the same time, Edes believes that involving family caregivers in the development of care plans has helped them integrate with the care teams. In a home care housing program under way in Camden, New Jersey, Stone said, a promotora/community health worker model is being used. In that model, the promotora is doing most of the frontline work, including medication management and involving patients in chronic disease self-management. These staff are working effectively with the rest of the team. “They are communicating with each other all the time,” and it is not high-tech.
Technology and Services
Kathryn H. Bowles, Visiting Nurse Service of New York Research Center and the University of Pennsylvania School of Nursing, asked about the key features that make the VA telehealth program work while others across the nation struggle with making it cost- and clinically effective. Edes said that although he is not responsible for the VA telehealth programs, his department does integrate with those efforts, which serve about 15 percent of veterans receiving home-based primary care. Telehealth appears to work well, he said, when the home care team and telehealth team meet regularly and solve problems together. This kind of effective integration boils down to good communication. Bowles asked if having one electronic health record across the entire VA system helps. Edes responded that in any kind of emergency situation, like Hurricane Katrina or even when veterans travel from one part of a state to another, it is tremendously valuable.
Judith Stein, Center for Medicare Advocacy, asked what can be done to close the divide between the people who need home care services and the people who provide them. Claypool believes that the home care worker minimum wage and overtime protection rules recently put on hold by the U.S. Department of Labor will “live to see another day,” in part out of growing recognition of how much home-based LTSS depends on these workers. Finally, Stein noted that many of the services that have been discussed at the workshop are vitally important but are being inappropriately denied coverage under Medicare.